Meeting with a Genetic Counselor
When you meet with a genetic counselor for the first time, they will likely ask you to bring your medical records and a list of your family members. During this conversation, they will take a detailed medical and family history and will be especially interested in knowing whether any family members have been diagnosed with ALS or frontotemporal dementia (FTD), as well as other motor neuron diseases, movement disorders, or dementias. The counselor may draw a detailed family tree (pedigree) going back at least to your great-grandparents. All this information will help the genetic counselor assess your potential risk of having inherited an ALS-linked genetic mutation.
You also will talk about the potential benefits and drawbacks of genetic testing in addition to your concerns and values to help you decide whether or not to get tested. The genetic counselor can also help explain the range of possible test results—positive, negative, or uncertain—as well as the current limitations of these tests.
If you choose to get a genetic test, your genetic counselor will go through everything you need to know and have you sign a consent form. Your counselor also can help you find out if genetic testing is covered by your insurance. After the test, they will review your results and explain what the results may mean for you and your family members. Finally, your counselor will assist with any next steps, such as additional screening or entry into a clinical trial.
For more information about genetic counseling or to find a counselor in your area, please visit the National Society of Genetic Counselors at www.nsgc.org.
Questions to Ask a Genetic Counselor
Genetic counselors are reliable resources who can answer questions about how genetics and genetic testing may affect you and your family. Some questions you might want to ask include:
- What are the potential medical, financial, and psychological risks of getting a genetic test?
- What if I don’t have detailed information about my family history?
- What is the testing process like?
- Is this test covered by my insurance?
- How accurate is genetic testing?
- What will the results of the test tell me?
- What can I do with the information I get?
- How will the results of my test impact my medical care?
- How could the results affect my insurance (life, disability, long-term care) coverage?
- Are there any support resources available to me?
Cost of Genetic Counseling
Genetic counseling is often covered by health insurance, but there still might be out-of-pocket costs if you have not met your deductible or if there is a co-pay. If you have questions about what an appointment with a genetic counselor might cost, ask your insurance company. For people who do not have health insurance, counseling sessions typically cost $150 per hour or more.
Another option is ALS Identified, a program sponsored by Biogen and offered through the diagnostic company Invitae, that offers free genetic testing and post-test counseling to people with ALS and their families. Talk with your doctor for more information.
Download Genetic Counseling Information Sheet
You can learn more about genetic testing and counseling in this video, which was produced through our collaboration with the International Alliance of ALS/MND Associations.
